Questions about migraine aura

[Mij]

@MeSci thanks for the link, I missed it in your post.

What did they recommend for you at the hospital? The symptoms you describe are scary.

 

[MeSci]

@MeSci thanks for the link, I missed it in your post.

What did they recommend for you at the hospital? The symptoms you describe are scary.

They didn't recommend anything for the migraine - they didn't even acknowledge in my discharge letter that I had had a migraine. All they focused on was the hyponatraemia, for which they blamed the drug desmopressin that I have been taking since the year 2000 for polyuria, as they have done before. This is clearly a misdiagnosis, over which I have been arguing with doctors for many years.

If it were the desmopressin, I would be overhydrated. If it were a migraine, I would be more likely to be dehydrated. I am pretty sure that I am dehydrated when this happens. PwME are rarely overhydrated AFAIK.

The fact that I had become hyponatraemic confused the presentation, as now I had both migraine and hyponatraemia symptoms, but several of my primary symptoms are typical of migraine and not hyponatraemia, such as aphasia.

I have pointed this out to my GP, but I don't know whether he has taken it on board.

I've now written out what I hope are clear instructions to my friends and to any healthcare professionals in case of a repeat experience. The main thing is that I want to stay out of hospital!!

 

[acer2000]

I started getting migraines when I was 25. They predated the onset of my ME/CFS by about 6 months. Mine seem to be mainly a reaction to certain foods. Mainly fermented/aged foods and also soy sauce. I can eat regular soy beans fine i.e. Edamame, but soy sauce and tofu will cause migraines. Originally my migraines were pretty simple, I'd get right eye visual aura and within an hour I'd get a headache mainly on the right side behind my eye. Then I'd feel this pressure and achy sensation in my head for a day or so that was made worse by sudden movement. I'd also get nausea.

Lately, I have been getting extended aura sometimes without the actual headache. The Aura can include visual symptoms, but can also include mood swings, feelings of cold, irritability, increase brain fog, drowsiness, trouble finding words and changes in my vision that appear to effect my glasses prescription. In fact, when I am in one of these states, putting on my glasses will make it worse. Sometimes all I get is the pressure feeling behind my eye and it feels like I might be getting a sinus infection, but I don't get the other symptoms.

Eventually, after several days to weeks of such symptoms I will get a headache, but the headache is often mild. After the headache, the "aura" symptoms will go away for a while and my head will clear/mood will stabilize. But I can very easily trigger such a state again, mainly by exposing myself to foods that trigger it.

I do a pretty good job of avoiding triggers, but I'd really like to find a way to treat/abort the aura process because it is so long and drawn out and causes such a wide variety of problems.

 

[Crux]

Some types of migraines are associated with Vasodilation caused by elevated Nitric Oxide production.

I think that's what's causing mine. I've been having another spate of migraines. ( Some have been more of an occipital neuralgia type.)

I used to have auras. Some reminded me of the 'Northern Lights'. Sometimes, I have what looks like sequins in my peripheral vision.

Last night, I awoke at 3:30, with a throbbing head, right side, the usual.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3072497/

 

[sweetlily]

Thanks for posting that. Any strategies for combatting unwanted vasodilation?

I sleep with a headband and something called a "Migraine Ice" which is slightly cooling and makes a difference and just plain feels good. Wondering if a "chilly pillow" might also be nice? Not sure about drugs or other strategies (other than maybe balancing hormones, as estrogen is a vasodilator) but i certainly relate to waking up at 4 am with a migraine!

 

[Crux]

Thanks for posting that. Any strategies for combatting unwanted vasodilation?

This is turning out to be a huge complex problem to face. It looks like, in most cases, the vasodilation occurs when a lot of nitric oxide,(NO), is produced by blood vessels and nerves during an inflammatory process.

Finding the cause of the inflammation is going to be the most difficult part. Then, the method of treatment is next.

Drugs that reduce the production of nitric oxide, ( NOS inhibitors), have not been very effective.

Vasoconstrictors can work for a time. Cold compresses are also vasoconstricrors. Good idea.

I believe there's most probably an infectious cause, and the vessels and nerves are producing extreme amounts of NO, causing migraines and more. ( I've also been having UTI symptoms with this migraine, and treating with antibiotics is helping both. I'm not recommending abx for migraine, just bringing up a possible cause for elevated NO.)

Foods high in nitrates can increase NO production. (beets, spinach,arugula,celery) Restricting such nutritious foods seems only to be a stop-gap, though.

 

[PennyIA]

I'm not sure about anyone else. But I'm 99.9% sure that when I got diagnosed with migraine aura's - it was an incorrect diagnosis. I was actually suffering from b6 toxicity and I believe tied with POTS. I also NEVER got a headache EVER when I was suffereing from them. Took four years to get tested for b6 toxicity and shortly after stopping it the auras ended. And within two years later (after starting methylation and detox treatment) the rest of a series of nueralogical damage got reversed.

 

[MeSci]

( I've also been having UTI symptoms with this migraine, and treating with antibiotics is helping both. I'm not recommending abx for migraine, just bringing up a possible cause for elevated NO.)

I often get urinary tract burning with my 'migraine' symptoms, but I don't think it's infectious as it goes away when the other symptoms do. So I am guessing that it's just inflammation.

I put 'migraine' in inverted commas as I am still in limbo as to what causes my symptoms, and doctors don't seem bothered enough to try to find out. As they have been severe enough for hospital staff to suspect a stroke, I care! I don't want it to happen again.

 

[Crux]

I often get urinary tract burning with my 'migraine' symptoms, but I don't think it's infectious as it goes away when the other symptoms do. So I am guessing that it's just inflammation.

I've read that uti symptoms can be vague to non-existent. But if they go away then, idk, although mine have in the past, without treatment.

There has been generalized inflammation with this migraine this time, but no aura. Last time, there were the 'sequins' days prior.

Most folks here have described varied symptoms, so I think the inclusion of yourself is valid.

You do have many interesting anomalies, though I see why going to the hospital could be dangerous because of them.

People with migraine have increased susceptibility to stroke.

 

[MeSci]

People with migraine have increased susceptibility to stroke.

As do people with findings like these from my CT scan in December:

There are new areas of low attenuation within the deep cerebral white matter in keeping with progressive small vessel disease. In addition there are numerous old lacunar infarcts in the basal ganglia on the left

indeed.

 

[sweetlily]

Anyone know if cannabis (better yet, thc and cbd each) are vasodilators or vasoconstrictors? I've seen articles on both sides.

As for infections, Crux, what types of infections? I guess viral and bacterial? etc. unique to each person? Any favorites to mention?

 

[Forbin]

I did a search for migraine aura on here, and didn't come across very much. I wondered if many other people have them, as I had thought they were pretty common in PWME. Any other thoughts on things that might help with them?

I experienced my first migraines within the first few months of developing ME. They were bad and came in a long series, and then they just went away. They were not preceded by aura.

About 4 years later, I had my first experience of a visual migraine aura (expanding, crescent-shaped, triangular-patterned "kaleidoscope" of light lasting about an hour). I would get them a couple of times a year, often 2 or 3 episodes just weeks apart, then nothing. Sometimes, there were years of "silence" between episodes. These events were never followed by a headache, but they would leave me feeling somewhat "out of it."

More frequently, I get a weird effects where a small, irregular dark spot rapidly appears in my visual field. It looks pretty similar to the aftereffect of a camera flash going off in you face (or the aftereffect of a brief look at the sun), but it lasts longer. Over about half an hour, the spot gets smaller, sometimes "dissolving" into smaller parts occupying the same space. There is no following headache.

I spoke to my ophthalmologist about this, and he said that this was also a form of visual migraine. I wonder if this could be triggered by allergy, because I've noticed that I am sometimes sneezing more around the time that I get these "flash bulb" effects in my vision.

Just curious if anyone has experienced something similar.


[FWIW: Technically, "ocular migraines," aka "retinal migraines," occur in the eye, whereas "visual migraines," or "ophthalmic migraines," occur in the brain. The terms are often confused. "Ocular migraines" produce a degree of temporary loss of vision in one eye and are considered more serious than "visual migraines." ]

 

[Crux]

@sweetlily ,

There are some conflicts about the kinetics of cannabis. Some write that it increases nitric oxide synthase, which increases NO, causing vasodilation.

Cannabinoids can be anti-inflammatory, and may help with migraine by reducing the inflammatory peptide, CGRP.
CGRP has been found to be elevated in migraine.

Cannabinoids can also lower another inflammatory substance P.

Here's a long article about migraines : I must first caution that it does use animal testing. ( Sorry, @MeSci , I do enter 'human' when searching)
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2771268/

There are viral, bacterial, and protozoal infections that cause headaches, but I'm still searching around, .

btw, B12 has helped with migraines, both mb12 and hydroxo b12.

 

[Crux]

"Ocular migraines" produce a degree of temporary loss of vision in one eye and are considered more serious than "visual migraines." ]

I only had one once, about 10 years ago. It was during the sickest time of my life.

I feel like some neurological damage could be happening. Concentration has been worse.

I'm not sure about visual migraines. I do 'see things', but not sure about the qualification.

 

[Forbin]

I'm a bit confused about this also because the kaleidoscopic "visual migraine" aura also causes a temporary, partial loss of vision, in that the vision is temporarily obscured by the aura. My "visual migraines" can also seem to be in one eye, even though my eye doctor assures me that I'd see them in both eyes if the lighting was right.

 

[mermaid]

I thought I would chip in again here, as I was the one to start this thread.
So sorry @MeSci to hear of your horrible experience. Certainly I have never had anything that bad.

I see that I posted at the end of 2014. Last year I tried various things to help with the migraine aura, and I did have one small breakthrough. I read on a UK Migraine charity website that if you have migraine first thing in the morning then it's almost always down to blood sugar issues, so eating something last thing can be helpful. I have done that for a while and I think it does help THOSE kind of migraines.

However I do get them at other times too, and last year I seemed to have an awful lot of them. Even more scary, last year I had 3 retinal migraine aura which is unusual for me. These are the kind that @Forbin mentions that come from the eye. They were always in my left eye which had a major op for macular hole some years ago and torn retina, and has since had a cataract op on it. I don't know if there is a connection there.

Usually they are just straightforward migraine aura from the brain (if they can be described as straightforward!). Thankfully none recently though, and since Christmas I have only had one migraine aura also which is a reduction in what I was getting before. I have no idea why the reduction though! There is no obvious reason for that and in fact I had to rush up to the eye hospital a few weeks back to check out whether I had a detached or torn retina in the other eye (thankfully I didn't have but the stress itself and fatigue I was getting could have triggered migraine so it's a miracle it didn't really).

 

[MeSci]

@mermaid - sometimes I wonder whether things are related to locality - neither of us have had migraine (aura) since Christmas, and both I and @cornwall13 had colds in January for first time in many years! (Although mine started in December and I strongly suspect that I caught it in hospital.)

 

[mermaid]

Hi @MeSci Well I did have the ONE migraine aura since Christmas, but it's definitely a big improvement so far for 2016. I keep a kind of symptoms diary and last January I had 4 apparently!

As for the colds thing. Well I seem to have a lot of what I call 'almost' colds this time of year. I feel I am constantly fighting something off - sore throat, nasal and sinus soreness and pain, and feeling tired an run down. I was talking about it with my herbalist yesterday and she thinks it could be autoimmune allergy rather than a cold, but I find it hard to tell though of course if it comes out as a full blown cold then I know. There are a lot of moulds around with all the rain.
Last January I did have bronchitis, but that's unusual for me.

 

[MeSci]

Hi @MeSci Well I did have the ONE migraine aura since Christmas, but it's definitely a big improvement so far for 2016. I keep a kind of symptoms diary and last January I had 4 apparently!

As for the colds thing. Well I seem to have a lot of what I call 'almost' colds this time of year. I feel I am constantly fighting something off - sore throat, nasal and sinus soreness and pain, and feeling tired an run down. I was talking about it with my herbalist yesterday and she thinks it could be autoimmune allergy rather than a cold, but I find it hard to tell though of course if it comes out as a full blown cold then I know. There are a lot of moulds around with all the rain.
Last January I did have bronchitis, but that's unusual for me.

Cold symptoms without the snot are common in ME - I think they are just PEM a lot of the time. But I had a full-blown streaming cold this time. Even lost my sense of smell completely.

I keep a health diary too. "An unusual thing to do" said my weird neurologist. It has proved helpful with regard to monitoring symptoms, supplements, etc.